update

[Brychni]

Had my appointment with GP who said I wasn't in need of an immediate MRI scan. He has however referred me for one as everything I told him is consistent with nerve issues in my spine probably caused by the RD. I get lots of persistent twitches which I have never mentioned before because it sounds so weird. They are always in the same places. Currently under my left eye - it looks really weird, as though my lashes have taken on a life of their own! Also get them in my left ankle.

When I spoke to the nurse yesterday she said she was also going to book a Zoom appointment with the consultant so I am just going to wait for that. GP said they were actually managing to keep on target with appoints in rheumatology so hopefully it won't be too long there will follow an increase in medication.

Will keep you posted.

[allanah]

Good news, there is one problem i was concerned fitted what you were saying Cordia equina which I'm VERY glad they now ruled out by your appointment!!! Keep us updated xx

[helixhelix in reply to allanah]

Yes. i had Cauda Equina in my head too, but didn’t want to worry anyone! It is quite rare...

But, any loss of sensation or control before you get MRi then don’t delay in phoning for help.

[Marionfromhappydays]

👍

[MuppetBaby]

Interesting I get twitches all over and didn’t initially mention this to my rheumatologist as was just in one knee and was presumed to be muscle fatigue from physio. It is now a pattern I recognise when I am starting to flare as the twitching increases. More recently my mouth, but also hand, foot, arm and thighs. I mentioned it to the rheumatologist as it was occurring more often and in several places she just says keep an eye on it.

[Brychni in reply to MuppetBaby]

I get strange sensations too; a 'wet patch' on one bum cheek, sudden stabbing in my face - I kissed my daughter on the forehead the other day and it felt like a shard of glass had pierced my lower lip. It was so 'real' I actually checked her forehead to see if there was anything there. About a minute after it happened just below my eye. I've also had a burning, prickling patch on my thigh, again so real I checked the area several times. The ankle twitch is a regular.

[springcross]

I'm glad to hear you're getting the MRI anyway Brychni. Let's hope it doesn't take too long. Keep us posted. xx

[Brychni in reply to springcross]

GP did warn me that it would be no time soon, though.

[springcross in reply to Brychni]

Oh well, typical, a bit too much to ask for then isn't it!! Crazy!

[Brychni in reply to springcross]

But actually my main concern at the moment is that MTX doesn't really seem to be doing anything, but the nurse chose to seize (probably understandably) on other issues. I mean, I am assuming that if medication is effective it will sort out my back and neck problems so I was hoping there would be a review of medication. she has said I will have a Zoom appointment with consultant so I hope that will be soon.I have a bunion now, ffs (excuse my French) but I'm so sick of it all. It's really painful and has come up very quickly. In fact both big toes in the next joint nearest nail are painful, even to touch. Even the slightest pressure from footwear hurts. I never did really wear heels a lot but I'm certainly never going to get the opportunity now! 😪😄

[helixhelix in reply to Brychni]

Do list out symptoms and then you can quickly run through the priority ones when you see consultant.

The foot is worth mentioning, as sounds like a sign of active inflammation, plus back and neck.

Sorry to say if back and neck are due to permanent changes like osteoarthritis then the drugs won’ help much. Osteoarthritis is the pits. So I hope it is imflammatory!

[Brychni in reply to helixhelix]

Hi helix - yes that's occurred to me too and the GP said something to that effect. In fact someone I met a few years ago when I first started to get symptoms, had started on a similar path, was largely ignored by GP and ended up having huge surgery in the whole of his spine because of spinal stenosis. He could still only shuffle around. Same old story, just fobbed off. In the end they took a loan out for an mri scan.I asked about why my physio therapy had stopped and he told me it's because you only get a block of 10 or so and then that's it. He candidly admitted that the NHS is target driven and doesn't give a toss about prevention or self help. He implied that it ends up being extremely expensive, no forward thinking. Pathetic. I've mentioned before that my family are German and are constantly telling me to go this department or that department and I keep telling them it just doesn't work like that here. They can't get their heads around it. My mother seems to have limitless access to all kinds of health care at her fingertips.

[springcross in reply to Brychni]

Hi Brychni. And of course, it never rains does it!! You're probably right about the nurse, she is more than likely meaning to leave it for the consultant which may be just as well as you have a couple of other things going on too. Goodness, I really hope they can get you sorted soon and that you don't have to wait too long for the Zoom appointment. I agree with hh about listing out your symptoms as things can easily be forgotten during a conversation about other bits of you.😀 Hang in there, hopefully it won't be for too much longer. 🤞 xx

[Brychni in reply to springcross]

also migrainous this week. 😵😖🥴

[springcross in reply to Brychni]

And on and on it goes. Sorry to hear that B, maybe to do with your spine - it's all connected. Hope it clears soon as it really drags you down doesn't it! xx

[Hidden]

how long have you been taking MTX now for?

[Brychni in reply to Hidden]

Hi Deeb - October 1st, so that's about 17 weeks? When I first mentioned that hydroxychloroquine wasn't doing anything I was told that things should at least be the same and not getting worse so I assume it's the same with MTX. The bunion, increased elbow and neck pain are, weak achy wrists are all new since starting MTX.

[helixhelix in reply to Brychni]

Are you sure it’s a bunion? Odd to have them appear on both feet at once...and on toes not the sides.

[Brychni in reply to helixhelix]

well, on the left foot at the base of the big toe it has started to be tender to touch and is getting bigger, noticeably sticking out and sometimes is red right on the outside. It started a couple of months ago. I have had something similar on the other foot too but as that died down the other foot started. Also on both big toes the first joint nearer the nail are both tender to touch and have very localised swelling on them, almost like ridges coming out of the joint itself - but generally on the tops of both toes. That comes and goes so I assume it is RD/inflammatory.

[helixhelix in reply to Brychni]

Gout? A close relation....

[Brychni in reply to helixhelix]

No, thought about that. Just read up about bunions. They take years to form, mine is in process but really sped up over the past couple of months , they are either hereditary ( no one on either side of family has had bunions), or caused by badly fitting shoes ( never worn heels habitually and spent most of my life in boots, dog walking!) Or appear when there is an underly inginflammatory cause: rheumatoid arthritis.

[helixhelix in reply to Brychni]

I have a tailor’s bunion (on other side) it appeared in days when I had a little flare. Couldn’t believe how fast it changed! Sadly it’s a one way street, so still there but much calmer and less angry now.

[Brychni in reply to helixhelix]

Do you think that medication helped it?

[helixhelix in reply to Brychni]

It stopped progressing when I stopped flaring, and no longer hot and throbbing.

[Brychni in reply to helixhelix]

oooh! Hot and throbbing 😝